Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!

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Thursday, June 5, 2014

We Have a Super Hero Comedian in the Family!

Our super hero, Parker, is the strongest and bravest kid
that we know!After two days down on the
pediatric floor, he was moved back up to the pediatric intensive care unit
(PICU).Yes, we got a new “fish bowl” room
to swim in.Can I just say, the PICU
needs some major funding and if any of you out there reading this know of
someone who can help, please contact us.It is the floor with the most critical children and yet this place is
not attractive at all, there are little to no children friendly activities,
games, art supplies, movies, etc.They
have “hand-me-down” equipment (because all the other pediatric units have been
remodeled and updated) and half the beds don’t work correctly nor do they put
kids in a good physical position (it was actually causing Parker to have
shallow breathing and setting off the bi-pap machine and he had to get a new
bed).And the families shares a bathroom
(that is disgusting) with the rest of the floor and all the public guests; and
children are expected to also shower in there, if they can physically shower.

When we were told we were going back there I just felt so
defeated. We were then told that because
Parker uses a bi-pap machine for breathing at night, then he will always go to
the PICU from now on and that he should never have been moved down to the
regular floor. I totally lost it…I
boo-hoo’ed out in the hall until I am sure I was quite ugly. The thought of being in these conditions
every visit made my heart totally break for Parker. I am not quite sure how I can make this floor
better but I feel like we were put on that floor to see these conditions. It feels a little like the PICU is not benefiting from funding and I am definitely going to investigate that more. The staff in the PICU is incredible and they should not have to continue to
apologize to families for the condition of the rooms and bathroom situation. I deeply believe that happy children spill
over on to the nurses and that happiness can lead to much better healing. Joy in the PICU is much needed!

Amy, child life specialist, gives a High-5 before going back to PICU

So… late in the night we were moved back to the PICU fish
bowl room and they prepped Parker for another spinal tap that took place after
midnight. And they did the spinal tap
right in the PICU room with the curtain pulled and the glass door open… while I
stood right there in the hall…hearing the whole thing. Parker proceeded to “help” them prep…yes, he
knew what was coming and what he had to do and he completely amazed the medical
staff with the terminology that he knew, with how calm he was, and with is
humor. He made them all count to see how
long it would take to “put him out” and his goal was to beat his last time of
90 seconds. This round took him 105
seconds to “go to sleep” and they wrote it really big on the board for him to
see when he woke.

Here I stood as they did the spinal tap on the other side of that curtain.

As I stood out in that hall, just 7 feet away from the whole
procedure on the other side of that curtain…I cried, I prayed, and I laughed as
I shared with the nurse, who was so kind to stand with me, how incredible I
believed our Parker to be. The whole
procedure took close to an hour and when the whole thing was done, Parker
became our 2:00 a.m. comedy act. The nurses
and docs were totally cracking up at him as he conversed with us all. And yes, we caught him on video…ENJOY! Click here to view the YouTube Video of Parker coming off of anesthesia.

Parker’s cerebral spinal fluid (CSF) pressure has
improved some; but it was still too high at 34 (remember, it is supposed to be
under 20). But last time it was 42 so
this was hopeful news. The next
afternoon, we headed home and we slept hard and sound and long. Then I resumed with our med routine (because
they wouldn't let us in the hospital) and gave him his sub-q infusion of his Hizentra. Yesterday, we were pretty
sluggish.

Neurology follow-up appointment...look, they have fish too!

Today, we went back to his
local neurologist and they felt that his papilledema was still too predominant. They want us to proceed with pursuing getting
special approval to go to Bascom Palmer in Miami where they have specialty
neuro ophthalmologists. They were happy
that his rheumatologist/immunologist was able to desensitize him to the Diamox
and they want to start re-increasing his Topamax. So in other words…they are doubling up the
meds in hopes to decrease the CSF pressure and avoid shunting. They shared the same concerns about Parker’s
very compromised immune system and the shunt.

Our family is so glad that each of you in our lives and
supporting us through all of this. And on a happy note, Logan’s migraines have
improved some and he has made up all his missed work for school with only one
more day left. Bring on the summer! May each of you have a summer full of JOY and
LAUGHTER!